After the initial diagnosis of a brain or spinal cord tumor is made, you may need to consult other specialists and doctors, depending on the type of tumor and the treatments recommended. Together with you, these professionals will take a team approach and map out a general plan of care for your child. This plan will be continually evaluated and revised as needed.
Your child’s neurosurgeon will go over the precise details of what will take place during your child’s surgery. It is important, for several reasons, that you clearly understand what is going to take place. Not only are you going to be asked to give informed consent by signing the papers that give the surgeon permission to operate but you are also going to need to understand for yourself and your child what will take place. By giving consent, you acknowledge that everything has been explained to you—and that you understand it.
Ask what accommodations the hospital provides for parents staying overnight, such as recliner chair-beds, toiletries and bathing facilities for caregivers, laundry facilities, meals for parents, and available refrigerator space.
Take a proactive role in your child’s care by assisting with self-care, such as toileting, bathing, and eating. However, be aware that sometimes it may be best for you to step aside and let the nurse take over.
Request that painful procedures be done in the treatment room.
Depending on what type of brain tumor your child has, you may be experiencing long hospital stays. A hospital environment can seem intimidating at first, but we hope the hints we provide here will help you and your child feel more comfortable. Both of you need to feel as comfortable as possible in the hospital environment and with your child’s health care team. Don’t hesitate to express any concerns, ask questions, or encourage your child to ask his or her own questions—children old enough to think of a question are probably old enough to ask it themselves.
Just like their parents, children often feel emotionally stressed in the face of serious illness. Children’s—especially teens’—anxiety levels may already be high from whatever suffering the tumor has caused, from the loss of independence and physical ability, to pain or the prospect of painful medical procedures. Although parents’ shock, disbelief, and self-indictment at the time of diagnosis can hardly be contained, witnessing or sensing their parents’ feelings can increase children’s anxiety even more.